Tuesday, April 4, 2017

I hate surprises. On my 13th birthday, my mom invited five friends over to surprise me. As soon as I saw them, I said, “Seriously?! What am I going to do with you guys?”

Given my aversion to the unexpected, raising two girls who are medically fragile hasn't been easy. Two of our four daughters—Rachel, 10, and Janneke, 8—use wheelchairs and are tube-fed 24 hours a day.

Taking Rachel and Janneke out requires tremendous effort. Sometimes that effort, and the fear of obstacles we'll run into, makes me want to hunker down at home.

Depending on the weather, it can take 20 to 40 minutes just to get Rachel and Janneke to the van. This includes transferring them from their beds to their chairs, securing them, and adding any necessary coats or blankets. The feed pumps are then included and hooked up to the girls, as they are on continuous feeds. We wheel them from the bedroom to the front door or porch, depending on the weather. We use the porch lift to bring them down to ground level. From there, we wheel them to the van and begin loading. This includes opening and lowering the van lift, securing one child at a time on the lift, raising them into the van and securing the chairs with tie-downs.

We're incredibly thankful for the mechanism of the lifts, but we're reminded of Dr. Nefario in Despicable Me when he makes his slow, triumphant exit on his scooter after receiving his 22-fart gun salute. The lifts aren't cognizant of when we are in a hurry! Last year I read a post on Bill Peace’s Bad Cripple blog encouraging disabled people to use public transit and be visible in the community. Bill talks about how hard he and others fought for accessibility on buses. Yet he’s surprised at how few people with disabilities he sees on his daily bus route.

“If we are not present, ableists will do what ableists are good at—undermining disability rights,” he writes. “I know as winter sets in I am going to be in a battle with the city of Syracuse. I need to get to the bus stop. Snow removal is substandard. Curb cuts will likely be inundated with snow and ice. Bus stops will be blocked by cars and snow piles. I will be out there rain or shine. Where will my fellow cripples be? I hope to see you. I am lonely.”

Getting out in a wheelchair and relying on public transit and strangers for help isn’t easy. My cousin is a university student who uses an electric wheelchair. She’s been interviewed about her Greyhound"trip from hell,"when the bus wheelchair lift didn’t work, and the driver didn’t know how to properly secure her chair. Her wheelchair lurched forward, wedging her feet in the seat in front, and she eventually had to be rescued by firefighters.Because of the generous gift of an accessible van, my girls are not left with public transit as the only possibility to move around. But even with the van, I have to push myself to venture out.Bill’s challenge to his readers is simple: If we don’t go out and take that risk, others won’t become familiar with our needs and see the importance of advocating for an accessible province.

Last summer, I tried to take Bill’s advice and plan more outings for my girls.

Yes, I was exhausted, but, surprisingly, it was good. Yes, I noted many curious stares, but it was good to start conversations with people I wouldn’t otherwise engage with. Yes, I had to research and find accessible places for two kids in wheelchairs, but the payoff in using our new city “beach carpet” meant my kids wheeled right down to the water’s edge for the first time. The biggest hurdle in wanting to travel and visit is the lack of proper change tables. The back bench of the car or van has worked, but I (and my back) certainly appreciate the washrooms with adult change tables and ceiling lifts. We recently purchased a small table to store in the van as another possibility for changing on the go.

It is imperative I preserve their dignity and privacy; the girls aren't infants that I can simply change on the edge of a bathroom counter. More often than not, I've had to change plans, cut short our day, or reroute our way due to inadequate changing spaces or no spaces. Inclusive accessible bathroom space is critical and essential for everyone.

I hate hearing about inconsiderate folks that disregard accessible parking spots. But I am determined to give more weight and worth to the few helping hands that unexpectedly show up to open doors and free up parking spaces for us.

It is often the unlikeliest of types who surprise us with their offers to help. Not too long ago, we tried eating out as a family at Swiss Chalet. We parked in a spot that was marked with a wheelchair sign. It looked like it had once been two ordinary parking spots, but was recently changed to one large accessible spot.

We parked the van, thankful for the extra space to bring down the side lift for our wheelchairs. After our meal, I left with the girls, while my husband Ralph paid the bill. I stepped outside only to find that someone had parked their car right next to our van, thinking the space was just enough for another vehicle to squeeze in.

My frustration began to simmer, as I thought about waiting for Ralph to come and help, or returning to the restaurant to find him. In order to release the lift, I’d have to move the van out of the parking spot in an already crowded lot.

Suddenly, I heard a gruff voice. “Do you need some help?” A man got out of his parked pickup. As he stood next to me, another man rolled down the window of his small car. It was parked in a spot that had extra space next to it. “You can have my spot,” he said. I glanced at the sign above. It was marked “For Expectant Mothers.” The helpful (pregnant?) stranger pulled out of his spot. Then the gruff man stepped into the now open space and crossed his arms, as if to protect the parking spot until I could back out of my tight spot and drive over.

More than once, I have received help from someone who I wouldn’t think to ask. More than once, I have been on the receiving end of someone’s compassion that first appeared rude, crass, or unpolished.

These are the kind of surprises I love. They cut through my own stereotypes and push me to tolerance and acceptance. The more I venture out with the girls, the more I realize that maybe I can learn to embrace surprises—to work through the frustration of unexpected challenges and see that, with a bit of grace and patience, sometimes things change for the better.Photo immediately below by Elma Regnerus. It includes all of the Pot girls—Sophia, Emily, Rachel and Janneke. You can follow their adventures at The Pot Family.

3
comments:

I love your thoughts and definitely mimic them. I.am a support worker and getting out isn't always easy, worth it, and tiring. I love that you get out with your girls. And yes, the beach carpet is pretty awesome. I most time ls ask to use a First Aid room to change most of my clients, they're everywhere you go these days. Scarborough Town Centre just redesigned their washrooms and added adult change tables to their all gendered washroom's that also have handle bars and extra room. I tweeted them and praised ten for their awareness. I swear, part of my brain is made up accessible washroom's and change tables across the city. Thanks for sharing. You have a beautiful family.

Nice article. I have three daughters, two of them are with physical disabilities and use wheel chair for transportation. It's not easy travelling with them to Europe and South America but with will, power of being positive and the surprising help from others when you don't expect it makes us believe that when there's a will, there's a way. Thanks for sharing your story.

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.